heart damage from herceptin

[nikwetz]

I have been on herceptin for a year now (every 3 weeks). I have been recently taken off because I was told that what we thought was pneumonia was actually heart failure due to herceptin. Has anyone had to get off? I am also on navelbine and avastin but felt like herceptin was keeping it from spreading. I had a recurrence to the scar in August 04 and have lymph nodes showing up on pet scan but no other place. I have been off the herceptin for a week now and am so afraid of what is going on in my body. What else is there to take?

Thanks,
Nik

[Nickii]

Hi: Im very new to this post. Found out about it from breastcancer.org

I am er/pr (-) and her2 (+). 3 cm tumor with one out of 13 nodes positive. I had four rounds of a/c and then four rounds of taxotere with herceptin. After my 12th round of herceptin I asked for a muga scan. Well sure enough, my ejection fraction went from 67% to 48% after 12 rounds of herceptin. My onc still wanted me to continue with it! I then went to see my PCP whom I have known for many years. We both agreed - I dont want to end up with heart failure.

I stopped the herceptin for 1 month. Will get another muga scan tomorrow. If the ejection fraction improves, I will go back on the herceptin and my heart will be monitored closely. If it doesnt improve, no more herceptin for this gal.

I am a registered nurse who knew very little about breast cancer until I was diagnosed and had surgery 6-2-05. I was so surprized that the muga scan was not automatically scheduled or recommended by my onc. My advice is, take control of your life. Make sure you get your heart tested before and during your herceptin. I dont want the treatment to be worse than the cure.

Good luck to everyone. Being her2 positive is scary.

Nickii

[suniskye]

My muga went from 75% in sept prior to taxol and herceptin to 50.5% in november before herceptin alone. after 2 doses every 3 weeks on this past monday muga was 48% and herceptin was stopped.

My question is, since your a nurse, will this fix itself and do i need to worry?

Thank you.

[Joe]

Experience has shown that your heart function will return to noral after Herceptin is discontinued. Unfortunately you are one of the 4% of patients who have this adverse reaction.


Several members take Coenzyme COQ10 as a way of building up their heart muscles. There is some evidence that this works but the research is inconclusive.

Regards
Joe

[Unregistered]

I too am on herceptin going on 4 months this feb 12. You say only 4% will have irriversable heart damage. I keep worring about my heart both my parents had massive heart attacks I told this to my onc and she said that my heart was fine muga at 72 in November after herceptin taxal.

She also said she may want to continue the hercetin after the year is up. I too am taking herceptin every three weeks now I did take it every week up until now. Are there any symptoms to heart weekness I do get a pain every now and then in my chest.
thx pls respond
jackie

[suniskye]

Hi. I made an error in my post above, my muga was actually 42%, not 48%.

I did not experience any problems until I began to get it every 3 weeks in triple doses. Of course my muga did go from 75% to 50.5 during the 12 weeks (weekly) that I received it. However, I had my first triple dose on December 19th. I felt like I had the flu for 24 hrs but then went back to work. On the 25th (Christmas) my feet were killing me and I thought it was the heels I had on so I took them off and my family just about freaked out when they saw how swollen my feet were. On Tuesday the 27th when the doc's office opened back up, they called in a prescription for a dieuretic. Also about that time, I began to feel like I could not breathe right. I had to breath deep to feel like I was breathing correctly. By Thursday I could not stand it anymore and when I went for my radiation treatment and was lying on the table the tech said I ought to call my onc because she could tell I had difficult breathing while laying down. I ended up in the ER for 8 hours .... I was sent home after being told everything was ok (the did not do a muga but did all kinds of other heart tests). After the 2nd dose of Herception 3 weeks later, the same thing happened and the swelling continued despite the dieuretic. However, this time I remained calm and did not get upset and that kept the breathing thing to a minimum. The day I was scheduled for my 3rd triple dose, I demanded a muga. The muga came back at 42% and I was told I would not be getting it anymore. The onc told me that I should not be having symptoms at 42% but I know I'm not nuts. It is really very frustrating.

[Joe]

We just posted a lecture given by Dr. Dennis Slamon at the San Antonio Breast Cancer Symposium. In it he states that the majority of cardiovascular problems occur in patients that had prior A/C or other taxanes.

Regards
Joe

[suniskye]

thank you. i had 3 months of AC ... AC also causes the heart damage from what I have been told ... my muga was still 75% after AC tho so I guess a combination of both is what my problem was.

[sadie]

Before any treatments, my Muga was at 71.8%
After A/C treatments every 3 weeks x 4, my Muga went down to 55%.
The tech thought it might have been a technical error, so they suggested an Echocardiogram. The Echo showed 58%, so the 2nd muga was not that far off.
I just received my 1st dose of the 12 weeks Herceptin/Taxol combo. I will be tested again after the 12 weeks.
Shouldn't I be tested sooner?
Is there anything besides exercise that I can do to help the percentage stay up there?

[al from Canada]

As Joe commented, CO-Q10 is taken by main women on the site for just that reason. A few, including my wife, had their MUGA'S actually improve a few points. Research has shown that AC is mostly responsible for the drop and once combined with herceptin, there are the problems. In fact, if you were to take AC and herceptin concurrently, the chances of having cardio problems are 17%!! They are 4% if not taken concurrently.


As far as CO-Q10, if you are taking chemo, I wouldn't take more than 100 mg/day. If you are not taking chemo, (herceptin is not considered chemo), than some of our chemo-warriers are taking 200 mg / 2 x day. CO-Q10 is recognized by the FDA as having cardio-protective qualities. Be careful with this cardio stuff because if you push it too far, it is irreversable! As well, 3/4 of all low MUGA's are NOT symptomatic. It may be wise to have a second MUGA as there are false + and - associated with this test.

Good luck,
Al

[sadie]

Thanks Al for all your info. I asked the nurse about the COQ10 and she just smiled and said "the herbal treatments are not all they're cracked up to be."
I'm going to ask my dr about it when I see her on Feb 28th. I'm fairly new to all of this, so I'm afraid to make any moves at all without asking the dr or nurses first.
I asked why they weren't going to do a repeat Muga when the 1st one had "possible technical problems" according to the report. She said the Echo would give them the results they needed.
I'm going to ask the dr to do another Muga before the 12 weeks is up (of the Herceptin/Taxol combo).
Sometimes I wonder if all of this is worth it considering all the risks of chemo.
I was dx with stage 1 IDC/ 1cm / HER2+++/ ER+ & PR weakly +/ sentinal node-
I was told I was borderline for taking chemo considering it was just 1cm, but because it was HER2+ they didn't want to take any chances that one cell might have "gotten away". So far, I'm handling all the treatments well, except for the heart.
I started with AC combo 4x. Now, after my 12 weeks of Herceptin/Taxol, I will be getting Herceptin for 1 year.
I'll let you know what the dr says about the COQ10.
Thanks again,
Sadie

[sharon1441]

You would think I would have found this site sooner! I was diagnosed with ER/Pr- Her2+ stage 1 class 4 bc in 5/2005. After 3 surgeries, all unsuccessful, we started chemo in June, 2005 with herceptin. I finished chemo in Dec. 2005 and continued with Herceptin, my last infusion will be in June. I have never had any heart tests during the entire year - how unusual is this? Should I be concerned?

[MJo]

I got my follow up muga results yesterday and my score dropped from 70 to 59. I had 3 AC (got too sick to take the 4th). Also took 4 taxols and 8 herceptins with no trouble. I was angry and upset about the drop, but that didn't stop my from taking Herceptin no. 9 yesterday. Will keep taking it unless my score drops below 50, but hopefully this will never happen. I was pretty confident that my score would be at or near 70 again because I felt good. The results were a shock. It reminded me that I had a dangerous disease and the treatment has risks. The oncology nurse giving me my herceptin said the drop was probably caused by the A/C. That's why I'm so glad there is a Topol2 test available so that some Her2 women can skip adriamycin if the test is neg.

[Bev]

Hi Sharon,

I think it's very unusual not to test your heart! But by the time you make an appointment you'll be done with herceptin and you have no baseline to compare it to. I'm just a layman, so if it were me and I had no symptoms, I would finish the herceptin. If the docs want to add another year of herceptin, I would insist on testing. I think I would also ask what their rational was for not testing.

I think if you were going to have a problem, it would have shown up by now, but you never know. Good Luck, BB

[al from Canada]

Again, Co-Q10 is the ONLY recognized suppliment by the FDA that has a therapuetic effect (this could be 6 months old now) and that effect was improved cardio funtion.

Al